Limb-Girdle Muscular Dystrophy (LGMD)

Candles and Holly

Bill was involved in politics for many years and enjoyed painting and writing.  His autobiography was published in 2001.  In 1993, Bill received the MDA Personal Achievement Award for Pennsylvania.  This artwork was featured in the 1997 Holiday Wishes card collection.

Boat with Waterlilies

Christopher was a published writer and self-taught painter.  His artwork has been shown in several local exhibits as well as in North Carolina and New York. Two of Christopher’s paintings are in the MDA Art Collection.

Blue Spruce

Barbara received a bachelor of fine arts degree from Kent State University.  Her work has been seen in numerous galleries and exhibits nationwide.  Barbara’s book, “A Wing and a Prayer: An Artist’s Journey with Muscular Dystrophy,” was published in 2007. She was a member of the Ohio Watercolor Society.  This watercolor was featured in the 1998 MDA “Holiday Wishes” program.

Aspen Colorado


Ruth was an elementary teacher, guidance counselor and tutor.  She held bachelor and master’s degrees from Regis College and Framingham State College in Massachusetts.  Her artwork has been exhibited throughout New England.  Ruth also served as the 1999 MDA Personal Achievement Award recipient for Masachusetts.

A Bird

Jennifer received a bachelor’s degree in graphic design from the Savannah College of Art and Design.  She worked as a portrait artist at Busch Gardens in Williamsburg for four years and is employed as a graphic designer.

Living With

Dear Friends:

When I was 4 years old, my parents took me to a specialist to find out why I walked with an unusual waddle. They learned I had limb-girdle muscular dystrophy.

Mandy Van Benthuysen

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Clinical Trials

About clinical trials

A clinical trial is a test in humans of an experimental medication or therapy. Clinical trials are experiments, not treatments, and participation requires careful consideration.

Although it's possible to benefit from participating in a clinical trial, it's also possible that no benefit — or even harm — may occur. Keep your MDA clinic doctor informed about any clinical trial participation. (Note that MDA has no ability to influence who is chosen to participate in a clinical trial.)


Throughout the 1990s and the first decade of the 21st century, MDA-supported researchers identified dozens of genes that, when defective, cause LGMD.

This gene identification work continues to the present day, along with research to determine the precise function of these genes so that missing functions can be compensated for and toxic functions can be inhibited.

Medical Management

Assistive devices

Simple devices like a cane or a long-handled reacher can make things easier as weakness progresses.

A power wheelchair or scooter becomes convenient when weakness in the pelvic girdle and upper legs causes frequent falls. People whose LGMD has reached this stage often find that a great deal of their independence returns, and they’re much less fatigued when they begin using this type of mobility equipment.


There are at least 19 forms of LGMD, and they’re classified by the genetic flaws that appear to cause them. Some 15 specific genes that lead to production of muscle proteins have been implicated as definite causes of LGMD when they’re flawed. MDA research was behind much of the work that identified these LGMD genes.

Genes, located on chromosomes in each cell in the body, are the codes, or recipes, for production of the body’s various proteins. The genes associated with LGMD normally make proteins necessary for muscle function.